This morning, I am feeling robbed. I went to sleep thinking of how to make Ruby's little birthday celebration special on Thursday, and dreamed about it all night. But I woke up thinking about how it will never be what I want it to be, because she is not there. It's all I want. It is all I want for FOREVER.
I look at picture of myself from January-August 12 and I feel sick to my stomach. I look so happy. So content. Even with a very sick child, I am content to have her. To have both my girls in my arms. I wonder, will I ever feel complete joy again? Will I ever be content again? It is like a life sentence, this grief. It is just something I will carry for my whole life, and that is that. But truthfully, if I can't have her, I need to grieve her.
Kate talks about Ruby all day. I am so happy she thinks about her, and wants to talk about her like we do. She often prays, "Please bless us that Ruby can stay." It use to make me so sad to hear those words, and think that Kate didn't understand. But, I really think she does understand, and I like to think she is talking about her spirit that we want to stay with us every minute.
I told Kate yesterday that it was Ruby's birthday next week, and she got so excited and ask, "Will there be cake? I love cake, mama."
I am thankful for my Kate. I am thankful for her innocent and pure little testimony of our forever family. I am thankful for Ruby, and that she has instilled into our hearts everything that is important.

Why

Deciding to open this blog to the public was a very hard choice for me. I wasn't even blogging very often, we were so busy with Ruby and everything going on. One day, I had the strongest feeling that I needed to open it to the public, and I needed to start writing about our journey. I questioned this feeling, and stewed about it for a long while. But, I know that the feeling I had was something that could not be ignored.
Blogging about Ruby was very hard. Being honest about her struggle, and how sick she was, was something that was extremely hard to do, and took a awhile to share more openly. I thought at first that I needed to write to help other families that might go through what we were. I was hungry for a real life account from someone else, that had gone through, what we were. But, I couldn't find it.
As Ruby became more and more ill, it seemed like the reason for blogging changed. Being at the hospital full time with Ruby, and a lot of time alone, left me wanting to vent, and write down my feelings. It became therapy for me. I didn't need to pay for it, I didn't need to leave Ruby for it. It helped.
As people started to learn about Ruby and follow her story, I didn't feel so alone. The comments would come in on my phone throughout the day, and it would give me hope. I also felt like Ruby was giving hope to people who hadn't had it for a long time. I would get emails from people who had never prayed, who had never believed in God, saying that they had started, because of my girl. I felt like it was the only thing I could do, for her. I could write, and I could tell her story, and I could ask people to pray for her. It's all I could do.
I remember a particular day, a month or so before Ruby passed away. We were in the hospital, and she was sleeping in her crib. The thought came to me that I needed to write down my feelings for Ruby, while I could still use the present tense. I instantly thought what a silly thing to think, but I did it. I wrote about her, and I got to use the present tense. Something I didn't get to do for very much longer.
Another day, not much longer, I started writing about my new perspective. I never left Ruby awake in her crib. I was always holding her, playing with her, loving on her when she was awake. But that day, when she woke up, something told me to keep writing. I remember the guilt I felt as I put on a Baby Signing Time for her, and kept typing. That post was something that I needed to write for myself. Being a grieving woman, but also a mother to a 3 year old, I needed that reminder. And still do.
In the end, I believed that the whole reason for my blogging, was because we needed that audience to be able to find her donor. If I had never blogged about her, we couldn't have asked for help. Those final 3 people that showed up, gave us hope, until the last minute. Something that Heavenly Father knew we needed as parents to Ruby.
And now? Sharing how I feel, how I grieve, how I survive? Not fun. If you have been around me in the past 4 months, you know I don't like to talk about how we are REALLY doing. I write a lot. And sometimes I choose to share those feelings on my blog. Every time I do it, I wonder why. Every time, I am reassured by a comment, or email that it helped someone.
It's not fun blogging about this. I don't like it. But, I was asked to do it, and I have. And I really believe that I have been blessed with friends, experiences, and love that I wouldn't have, had I chosen to ignore that prompting that day.
There were a few blogs that I have followed since I became a parent. Each of these mother's had lost a child. I feel in a way, they prepared me. After I lost Ruby, I felt so grateful for these mothers for sharing their feelings and stories.
And now? I hope the more people that can learn about Ruby, the more lives will be touched by her sweet spirit that is so strong that it can be conveyed somehow on these pages.
I hope that her story will continue to inspire, and continue to save lives.

Running for Ruby

January 7th
Santa Margarita Ford
Check in Starts at 7am
10k: 8:30
5k: 8:40

We are really excited for the first Run for Ruby. We would love for everyone to come out and support us, and the Foundation. We are so passionate about raising awareness of organ donation. Register here:
http://www.imathlete.com/events/RunforRuby

We are having a blood drive at the run as well. If you would like to sign up for an appointment, here is the link:
https://www.givelife.org/index.cfm?group=op&step=2&opid=932001

Be the Match, the American Red Cross, and Donate Life will all be there. We are all trying to save lives, and it is so exciting that we can do that in Ruby's honor.

Please come!

I need her.

I want to go back.

Sometimes it is hard to not feel picked on.
Sometimes it just hurts to bad, and so deeply, I wonder how I can keep myself breathing.
I know Ruby is so close to me, but I just yearn for her to be here physically. I want her to burrow her head into my neck. I want to give her a bath. I want her smell, her touch, and her giggle.
I want her back, and I want it so bad, it is hard to fathom that my pain and love are not enough for that to happen right now.
I don't want to be the girl who people look at and feel sorry for. Or the girl people admire because I am holding it together. I rather be the boring mom out in the hall at church with a crazy baby.
I want to be planning a first birthday party and watch my baby enjoy it. I want to be Christmas shopping for two sweet daughters.
I want, I want, I want...
And I don't want to wait. It just seems so far away.
It's not alright. I know it will be alright someday...but today it just isn't ok that she is not here.

Update

We have been keeping busy, and we wanted to update everyone!

Service Opportunity in S. CA:
There is an Angel of Hope statue at "Ruby's Place", and every December 6th, there is a candle light service for friends and family of angel children. We will be going that morning and cleaning up the headstone, and leaving a flower for each angel child. It would be a nice surprise for these families when they come to visit that evening to see their child's place looking beautiful. We need a lot of help. This is a great project to bring children to. If you can attend, we will be going on:

Tuesday, December 6th, at 11am.
El Toro Memorial Park, Lake Forest, CA

We are looking for flowers to be donated.
Please bring baby wipes, a grocery bag, and maybe a little broom.
Email me for more information.


Service Opportunity in Utah:
At the Angel of Hope in Ogden, UT, there will also be a candle light service. The cemetery will provide the flowers. It would be very nice to have the headstone looking beautiful here as well.

Tuesday, December 6th
1875 Monroe Boulevard
Ogden, UT

Email me for more info.


Run for Ruby 2012
We have been working away trying to ensure this is a fun day to celebrate Ruby, and to spread the word about organ donation. We would love to see you all there! Registration is open, and just take a minute to do.

January 7th, 2012
Rancho Santa Margarita, CA 92688

http://www.imathlete.com/events/RunforRuby



And to keep up on the latest with the Foundation:

1. Please "like" our Facebook page:
http://www.facebook.com/pages/The-Ruby-Jane-Foundation/163486743725357

2. Visit our website:
http://www.rubyjanefoundation.org/

3. Follow us on Twitter:
https://twitter.com/#!/RubyJFoundation

It's the destination that matters

I use to have my life perfectly planned out. It was a naive life. There was no pain, and no suffering. It was headed down a road that was safe, and pretty, and happy always.
And then real life hit me like a train.

I woke up, and my life was not so naive anymore. There was pain, and suffering. And a lot of it.

It seems like I should be headed down a different road now. It seems like the EXIT for LOST CHILD doesn't exists in this world. On that exit, all painful reminders of my new life do not exist. Target wouldn't have a baby section. There would be no medical shows on TV. The baby toys out at Costco for the holidays would be gone. Everyone would acknowledge my loss. Everyone would know what to say, and how to act. That road, doesn't exist.

I am forced down this same road with a new perspective, nothing else changed, but me. We are traveling with people who are still naive, like I once was. They think big problems are poopie diapers, messy houses, and money. And I can't blame them.

My perfectly planned out life has changed. It's not always safe. The road is unsure and not pleasant at times. But, I am learning that we are all headed in the same direction. That is what I am focused on. Instead of planning out the journey, I am now planning my life for my destination.

My Sunshine

My thoughts are all over this morning. I am learning how to avoid thinking about certain things, and how to distract myself easily, but sometimes, it just takes me over.
This morning when I woke up, it felt so cold, but it was sunny outside. It brought me straight back to last winter. I had both my little babes with me every morning. We would come down stairs and immediately turn on the heater. I would lay Ruby down in her bouncy seat, and then turn on the cartoons for Kate. Then I would opened up all the blinds. The sun was always shining right into our living room. Ruby loved the sun on her face. I would get breakfast, and meds, and change diapers, and get everyone dressed for the day, and then go upstairs to put Ruby down for a nap. When she was tiny, I would nap her in her bouncy seat. I would swaddle her nice and tight, and then rock her and sing to her, and get her very sleepy and then situate her in the bouncy. I usually put her in the sunshine in my room, and she would fall right to sleep.
It makes my heart hurt so badly to think I use to have a perfect sleeping little Ruby upstairs sleeping away in the sun. Little baby.
I am not quite sure how to get through these holidays. I am not quite sure how to get through time, period. I dread moving forward, because it means she is further behind. I dread staying stuck here, because it is painful, and it hurts, and I know I need to progress and better myself, and look forward to the day I can hold her in my arms again.
It still feels like a dream. A terrible dream that I can't wake up from. I know she is so close to me now, and that helps a lot, but there are moments of complete despair when the reality really hits me. Usually when I go into her room, and see everything untouched by my baby. Her empty crib. Seriously? An empty crib? How is that fair? And then I usually find the peace that I long for flood my heart and mind.
I know where she is. I know she is perfect. I know she is happy. I know she is close to me, and looking after our family. I KNOW I will see her again, and have her for all eternity.
I am trying to feel happiness as the memories flood my mind, and not just feel sadness that they are only a memory now. I need to learn that the sun shining in my windows should be a reminder of the sweet little sunshine that we had in our home and in our lives.
And that she is always here.

I miss my girl.

The foundation and the run have been a good distraction from the pain, but when I step back, and realize why I am busy, why we are starting this, my heart just sinks.

Her blanket doesn't smell like her anymore. There is a closet full of clothes with tags on them that she never got a chance to wear. Her sling is hanging in the coat closet, and hasn't been used in over 3 months. There was a little dust on it, and it made my heart break a little more.
I hate that it has been 3 months since she has been in our home. I hate that her bottles are getting pushed further and further back in the cupboard. I hate that the shelves that use to be hers for medical supplies, now shelve bread, and glass vases from all the flower deliveries, and odds and ends.
Want me to be honest? I just want her back. Everyday is just a struggle. If Kate were not here to pull the covers off me every morning, I would still be in bed. I find myself trying to find ways to keep her alive in our home. I want to talk about her. I want her to be talked about. I want her to still have a place in this family, and play a part.
I am not looking forward to the holidays. I secretly want to just hibernate until February. Last year we were preparing to move into our new house, a house that had room for another baby. I was 8.5 months pregnant. I remember thinking how next year I could not believe we would have a baby crawling and maybe walking around, and a 3 year old on Christmas morning. I was so worried about when Ruby was going to arrive. I was worried if it was too close to Christmas that no one would come to her birthday parties in the years to come. We were worried about tax returns, and insurance. Seriously? It makes me sick to my stomach that I was worried about those kinds of things.
I remember turning into a crazy lady about finishing Ruby's room. I was waddling through the mall, during the busy Christmas rush, looking for the perfect curtains, and shade of pink for her lamp shapes. I wanted it to be done and perfect before she arrived. Looking back now, I know that if I had not done that, her room would have never been finished after she was born. I am so thankful every time I go into her room. It was a perfect nursery for her. I loved rocking her in there, and nursing her, and putting her into beautiful girly outfits. Her room is a little piece of heaven. I feel so peaceful in there.
I miss Ruby. I miss her everyday. I miss her smell, her blue eyes, her smile, and her giggle. I miss holding her, and brushing her hair, and changing her diaper. I miss having two happy girls in my home, and two happy girls that need their mother's attention. Instead of planning a huge event, all I really want to be doing is making baby food, cleaning bottles, singing silly songs, and loving on my girls.
For now, I have the next best thing. I have Kate who needs me more than ever. And I have a great cause to put my extra energy into.
I found this in my photobooth. Forgot all about these pictures. I am inhaling her. I am so glad I did that. Every part of pictures with Ruby are so meaningful now.
I see a tired mom from being up all night. How lucky I was. I remember putting those jammies on her, and they were a little too small, but looked to cute on her.
In her left hand she is holding onto her PICC line. Little stinker always did that. Her right arm is on my shoulder. Makes me cry to think of that little hand just resting on my skin. I also see bright yellow stain on her right arm. Her vitamins were that color, and she had thrown up that morning. The flower on the table? Those are from a trip that Kate and Ruby and I had taken to Lowes together. I see the excersaucer I had gone out to buy just a week before. She went in it twice.

RJF Website

We would like to finally announce The Ruby Jane Foundation website. We are very excited about it. Everything is now in one place! Please check it out, and let us know what you think!


We want to thank Tyler Jorgenson of BIZNINJA for helping us with the website, and to Ashly Lark for the graphics!

*fixed the links!

Run For Ruby!

Just a week or so after our sweet girl passed away, the idea for this run started to turn into a reality. It seemed so far away, and so hard to pull together, but we have done it!

This Run for Ruby has really given us something to work for, and look forward to. It has been a great event to plan, at the same time helping us heal. We are so thrilled that it is getting so close. As her first birthday is getting closer and closer, my heart just aches for my baby. I wish I was planning a first birthday party, and in a way, I feel like I now am.

We wanted so badly to have the run in our hometown. When Ruby was home from the hospital, we were always outside, enjoying our community. We spent a lot of time at the lake, the parks, and walking on the trails. The run will be on a trail (paved) that we walked on with Ruby. It will also pass by our home.

There will be a 5k, and 10k race offered. We are going to have the Red Cross truck be there for those that would like to donate blood. Be the Match will also be there with their kits to screen potential donors for bone marrow. The goal of this annual run is to raise awareness about organ and tissue donation. With the help of our family, friends, and community, we can safe lives.

We are planning on having fun booths, great music, and a fun day celebrating Ruby’s first birthday!

REGISTRATION is now OPEN!

http://www.imathlete.com/events/RunforRuby?z=1320187410691

If you sign up before Saturday, Novemeber 5th, you will be entered into a giveaway for a photography session!

All you need to do is:

1.Register for the race.

2. Share the link on your Facebook.

3. Comment on our RJF Facebook page when you are finished.

If you are unable to run/walk with us, and you would like to volunteer, please let us know!

We can’t wait to see everyone there!

Get running!!!

(I hate running, like a lot...but thinking about my Rubes, keeps me going. If I can do it, YOU can do it!)

Her Leaves

I have not loved the changing of the season. I knew it meant it was just that much further away from us seeing her, and that upset me, but I knew it was something more than that.
This morning, I was pulling out to take Kate to preschool, and the leaves were being racked up in my front yard. At that moment, I knew. Those leaves were leaves that Kate, Ruby and I laid under during the hot summer. Those are the leaves that shaded us in our backyard planting while Ruby sat in her bouncy. Those are the leaves that she watched while laying on the couch. Those are the very leaves that we walked under when I took her outside to get her to stop fussing. It took a lot for me not to run over and explain just how precious those leaves were to me.
We have big, tall windows in our family room. We moved in this winter, and the trees were bare. I remember coming home from a 2 week stay in the hospital in the Spring, and the trees had tiny light green buds all over. It was symbolic for a lot of things for me. It seemed like every time we would return after a hospital stay, the leaves were the first thing we noticed. They were always greener, always bigger. Maybe since my baby was getting weaker, and sicker, perhaps that was a little hope for me. I don't know, but I have an attachment to those leaves!
At the park the other day, I had the same feeling. We spent a lot of time at that park. I sat on the bench, under the trees, nursing, and watching Kate play. The leaves will all fall. And new leaves will come. But those leaves have never watched us play. Those leaves have never seen those sparkly blue eyes. They have never created the shade that danced across her face. They aren't hers.
I know this must sound so strange. But, it is how I feel.
I feel the same way when I toss out food I bought when Rubes was with me at the grocery store. Or when I emptied the bottle of shampoo I used at the hospital. Even buying a new shirt, I feel like, Ruby never got to see this shirt! I guess these are all just signs that life moves on. The leaves change. Food goes bad. Who knew those things could be such a trigger?
I would be forever content rewinding to those hot summer days, laying under the trees with my girls.

When I vacuum.

Everywhere I turn, I am reminded that she is gone. I can't escape the constant reminders.
When I am vacuuming, I get to the spot where her swing was, or her bouncy seat, and my heart breaks.
I was cleaning out my pantry last week. In the back of one of the lower shelves, I found all her baby food, and puffs I had bought before she was even born. I was so excited for her to come to our family. Bananas were her favorite, so kept one in the cardboard, it just felt right.
Every night when we tuck Kate into bed, my stomach is just doing flips. I use to have two kids to tuck into bed. I use to nurse Ruby and get her into her jammies, and rock and sing her to sleep, while Matt got Kate all ready. Then we would have family prayer together, and Kate and Ruby would snuggle for a little while. It is just so obvious that she is not there.
Doing the laundry is strange. Ruby went through a lot of outfits in a day. The amount of laundry is so much smaller, and a lot less pink. I miss folding those tiny onesies.
Kate started preschool. When I signed her up 6+ months ago, I was excited to have that one on one time with just Ruby. Every time I get into my car after dropping Kate off, my car seems SO empty. I think, "What am I suppose to do now?" That is always the moment when it is very obvious that my life is not what I thought it was going to be.
Family outings are getting hard for me. Kate always declares, "Family HUG!" or says, "the whole family!" And my breath catches. It feels strange to be able to be out all day, and not worry about naps or bottles, or TPN, or meds. I WISH we had those things to worry about. Being spontaneous is not very fun anymore.
I know she is with us in spirit. I really think that she is around us all of the time, and participating in things we do, and making memories right along side us. BUT, I want her there physically as well. I want her in my arms. I want to be busy and stressed out, and tired and have spit up in my hair.
I see mothers everyday that look so upset and unhappy.
Do you know how lucky you are to have spit up in your hair? Do you know how lucky you are to have TWO crying babies in your cart? Do you know how lucky you are that you get to buy diapers? Do you know how lucky you are to have circles under your eyes from being up all night with your baby, and not from crying all night from missing your baby? Do you know how lucky you are that you get to nurse your baby? It takes everything in me not to walk up to mother's and just make sure they know!
Even though Ruby was just a baby, she had such a big place in our lives. I like that. I like that there are reminders around our home of her. It is painful, but it helps me feel like she really was and IS a part of our family.

Wristband and Picture Notice:

We apologize for the delay in shipping out wristbands and pictures. Due to the overwhelming response we ran out of wristbands and had to order more which are scheduled to arrive around the 18th. At that time we have volunteers coming to help us pack and ship them. So again, sorry for the delay and you should have it by the end of the month! Thanks!

Between the lines

There are certain conversations that are just very painful and I just want to scream and pull my hair out. But I just breathe and breathe, and then I don't feel like I am dying after while. I give the answers they are looking for, but inside I am having a battle with myself because I want to pour my heart out and make them understand.

Long story short, our insurances use to pay for massages on our old plan, and I had some I never used because I was pregnant, and had to use them up by a certain date. So, for the past 3 weeks, I have gone weekly. The massage therapist always asks me, "Are you hurting any where in particular?" UM YESSSS!!! And then comes, "Are there any injuries I should know about?" YES, A TERRIBLE INJURY! Then I spend the next 10 minutes taking deep breaths and trying not to cry. I just want to be a lady who comes in and is sore from lifting her children and pushing on them on the swings all afternoon. I want my injury to be my leg or arm, or anything but my soul.

I just got off the phone with someone in the medical field. She said, "And you had a neonatal death, correct?" Well, my beautiful, sweet, funny, and amazing daughter passed away 8 weeks ago today. She was 7 months and 1 week old. Is that what you were referring to? And then she later asked me how many weeks I was when I miscarried. I CARRIED HER in my ARMS! She was 7 months and one week old! And then went on to ask how many pregnancy I have had. Two, a 3 year old, and Ruby. "So you only have one child?" NO! I just told you. I HAVE TWO.

I have two children. I have a deep and serious injury that may never ever heal. Can someone make me a shirt?

9 Months

My little Rubes would have been 9 months old today. I can't help but wonder about what her tricks would be this month! I think she would have had a lot more teeth. That girl had 3 teeth, and was going strong! If one of those liver would have worked out, she would have been home and healthy by now. I think she would have been sitting up, and maybe trying to crawl. She loved applesauce and bananas, and by this point, I am sure she would have been eating lots of other yummy things. She was a pretty good sleeper when she felt good. I think she would have been sleeping through the night for sure. Baby girl loved to nurse, and I am sure she would be still loving that.
You know what stinks? It stinks that I have to wonder about these things. It sticks that she is not here in our home to physically see and watch, and laugh with. It just plain stinks. I don't want anyone under the wrong impressions that I am doing this well. It is SO hard. It is hard for 99% of the day. There are a few moments, sometimes only one, that I can understand. I am thankful for that relief in the grief.
Ruby, you are truly amazing. Everyday I am still learning from you. I know you are hard at work on the other side, and making sure your family and friends and being cared for. I know you are our little angel, and touching our lives in more ways than we understand or notice. I love you so much Rubers.

What Makes it Bearable

We went on a little getaway for the weekend with my parents. Everyone left the pool for a minute and I was people watching. I immediately spotted a baby girl, around Ruby's age, sound asleep on her mom's chest. The tears started to flow, and then came the body convulsions. When you feel like your a missing your insides, it makes you convulse I've learned. It is so hard to look around and see so many healthy, happy babies, and then feel the heaviness that is my empty arms.

Just a few minutes later, I received an email from a mother who had just lost her son days before. She shared with me that the choice to donate his organs, were made easier because of Ruby. I can't even describe the joy that brings to me. It is hard to understand most of the time why Ruby is gone, and why we have to endure this, but her impact on thousands leaves me speechless. It is hard not to feel comforted and more peaceful hearing a story like that.

And today, I bumped into a mom with a cute baby at Target. I have never met her before, but she shared with me how much Ruby's story has touched her life, and made her want to be a better mom. She also said she was now an organ donor. I tried hard not to cry in the middle of Target, but the tears came.

That is my Ruby girl touching people left and right. I am so proud of my daughter. I am so lucky, in so many ways.

When I see and hear the tangible ways that Ruby has touched lives, it reminds me of her purpose on this earth, and reminds me that our Heavenly Father truly has a plan for every one of us. Ruby has a pretty amazing plan. I am so happy to be a part of that.

I love you Rubers.

Missing her Ruby

The last time Kate held her baby sister. It was a very special moment, and one I will never forget.

Every morning I walking into Ruby's nursery, and opening up the blinds, and say,
"Good morning Rubes!"
Most of the time Kate is with me, and she says it too.
At night we close her blinds and turn on the lights in her room.
It just makes us feel good.
This morning when Kate and I walked into her room, Kate saw the box of Ruby's clothing and blankets that was just returned to us. Her whole demeanor changed. She ran her hands across the box, and gently touched her clothes. She looked up at a picture of Ruby and then back down to her things. I asked her, "What are you feeling Kate?" She looked at me and very quietly said, "I am feeling very.....I am feeling like I really want to see her."
So we sat down on the floor and went through her things and talked about Ruby. I pulled her into my lap, and we just rocked and were quiet until Kate said, "I really miss that Ruby."
Me too Kate, me too.

Nap on my chest

I remember this perfect day, it was about 8 months ago. Ruby was so tiny. Kate was so thrilled about her baby sister. Matt had gone back to work. I was feeling a little more like myself again, and so content with my role as a mother and wife. I was proud of myself because I had gotten ready that morning, and gone to the park with the girls. After a fun morning, I put Kate down for a nap, and nursed Ruby Jane.


I was about to lay her down in her cradle, but I just couldn't! She feel asleep on my chest. She was so sound asleep, and was curled right into me. She also had my necklace in the palm of her hand. She loved playing with my necklace. I thought I would just enjoy holding her for a bit, and then lay her down and get things done. But, I had a little voice tell me to just hold her. So I did. I held her for 3 straight hours while she slept. Kate slept the whole time. So it was just me, and my sleeping newborn on my chest. Oh how thankful I am that I did not go lay her down. I would not be sitting here recalling that perfect afternoon. Oh how I wish I could go back to that day.

Preschool

Kate has been excited for Preschool for months and months.
I actually remember taking a walk with her when she was probably 20 months old, and she heard a school bell, and said, "I want to go to school!" We have been counting down to this day, and it finally came. We laid out her clothes the night before, and talked about how to be a friend, and she was beaming! She was so excited all morning, but then got really shy when we walked in. It was so fun to see her in a school setting, and interacting with all the kids. I am so thankful for my big preschooler!













This girl is impossible to get a normal picture of! But I sure love her silly faces.

One Month

It has been one month. One month since my world changed forever. Well, to be more accurate, it has been 8 months, and 2 weeks since my world changed forever.
We spent the weekend being spiritually nourished. The feelings of peace were welcomed, and the things I have learned have given me much to think about.
I feel stuck. I don't want time to move forward, because it means it was been that much longer since we were with our girl. But, I want time to move forward, bringing us closer to her. I am just not ready to do anything. I am functioning. I am getting up, I am getting dressed, and I am staying busy with friends and family. I am eating. I am drinking. I am running. I am breathing. But that is really it. I am going though the motions, and trying to avoid the emotions.
Last night, when all was quiet in our home, we ended up on the couch watching little videos of Ruby on our phones. That is when it hits me the hardest. Pictures or videos of us with her. She was REAL. She was our baby. We held her and bathed her and sang to her. She knew us, and loved us, and smiled and laughed at us. That is when the reality of our life hits me. We won't get that back for a long time. We have our memories. We have thousands of pictures (thank goodness I was obsessed with taking pictures of her). We even have videos. We have read books, and talks. We have talked to other families in our situation. We have talked to a general authority even. We have testimonies. We have SO much. But, we at the end of the day, we still don't have her in our arms. It doesn't matter what we do, how much we suffer, how much we learn, how much we cry or scream...she is still away from us.
So, one month out...where are we? We are here. We are just here. The longing and missing are worse. The memories of those last 48 hours, are getting foggier, thankfully. We have strengthened testimonies. We are closer as a family. But we have a huge gaping whole in our home right now.

Today I am missing Ruby so much I feel like I am slowly dying inside. We went to Target today, and just being there, walking the isles, just felt wrong. To me, going to Target was always my way of show myself that we were a normal family. We might have been hooked up to pumps, and have Ruby hidden away in her seat, but gosh darn it, we were normal.
Today I didn't feel normal. I felt like I had a big black X on my forehead. I felt so wrong to be acting like a normal little family shopping around, when all I wanted to do was cry. I could not look at the baby section. I almost went down one of the isle by habit, and when I realized I wouldn't be needing anything, it felt like a huge pit in my stomach, and a fresh wave of grief washed over my whole body.
You know where I feel the most normal these days? The cemetery, at Ruby's place. If I look sad, or I am crying, whoever is watching knows the reason why. If I am smiling and happy, whoever is watching knows I must be remembering a sweet moment.
I haven't accepted that she is gone. I am realizing this. When I allow myself to really think about what has happened, I can't describe what goes on inside of me. Sometimes I honestly think it is a dream. How could it NOT be a dream. Oh please be a bad dream. But, it is not. This is my life now.
I have moments where I think everything makes some sort of sense, and I relish those moments. I know I will get to the point where I will be more healed, and more at peace, but I am just not there yet. I feel my Father in Heaven. I feel His arms around me. But, I know there are times that he has to back up a little bit, let me feel, let me grieve, let me ask "WHY!!!?". He knows that I need those moments to heal. But he is there. He is there when I need him.

She would have been 8 months today. You know what? I am not strong. I am not doing this well. How does one grieve the lost of a child well? You don't. You survive. One excruciating second at a time. I just want her in my arms. I want to stare into her eyes, and have her look back, straight into my soul so she can feel how much I love her.

The thing about waves is that they continually come in.
Sometimes the sets are huge, and close together, other times they are small and spread out. But they are always there.

I feel like I am standing right on the edge of the water. Sometimes the tides come up, and I feel panicked, and scared. A huge wave hits me, and I am drowning. She is gone, my baby. I have to live a lifetime without her. How will I do this?

Other times, the tide is out a ways, and I see my toes in the damp sand. The pain is there, but not taking me over. I can enjoy the beauty of the ocean, and the small waves that barely reach my feet. She is always mine. Families are forever. I have 7 months worth of precious memories.

Standing at the edge of this vast ocean is something I have never experienced before, but have been preparing for my whole life. I can swim. I won't be swallowed up, even if it feels like it. I have the faith in my Savior and faith in the Plan of Happiness. That gives me the strength that I need to swim when I am drowning, and to enjoy the beauty when I am not.

Do I wish I wasn't standing in this place?
Yes.

But, I know that my Heavenly Father has me just where I should be.

Waves

Waves of pain and grief and agony seem to keep rolling in.
It seems to be the little things that set the waves into motion. Looking in the backseat of the car, and seeing only one car seat. Tucking Kate into bed, and then sitting in Ruby's empty room. Looking under the kitchen sink and finding her Burt's Baby Bees baby wash. One week I am bathing my sweet baby in my kitchen sink, and now she is gone. My mom asked me to drop my grandma off at the airport at 11am, and I automatically thought it was nap time. It is just impossible to wrap my head around. She belongs here. She belongs with me fussing and caring and loving her.
Usually when you are going through a hard time or trial, it seems like you can proactively help yourself to get though it, and then it is over at some point. I know that this missing will have to last a lifetime. That is a long time. There is no way around it, just have to go through it.
Ruby was so time and labor intensive, that it just seems too quiet around here. I went from constant go go go go, to nothing. I am trying so hard to be the mom I need to be to Kate. She took a backseat to everything for 7 months, and I know I need to gain her trust again. It is a process. This whole new life is a process. I am trying to just take it hour by hour. And most times, minute to minute.
Breath in. Breath out.

The Ruby Jane Foundation

Hi, this is Mike again. Ani and Matt have started the official movement of Ruby's legacy, "The Ruby Jane Foundation."

The foundation has a goal of promoting organ donation awareness, enacting legislation to enable families to make informed and educated decisions regarding organ donation, and to raise money to support the cause.

We have started planning a "Run for Ruby" that will hopefully take place each year on Ruby's birthday. We couldn't be more excited about this and feel like it is a great way to keep the fire burning that our little baby started. We anticipate having a 5k, 10k, and half marathon. Proceeds will go to the foundation and help us to enact the legislation we believe is necessary to help save thousands of people.

Join the movement. Join with us and help make a difference. Visit our page on Facebook and click the "like" button to receive news and updates about our mission.

Go Rubes!

Or click here:

The Ruby Jane Foundation

Last week, exactly at this time, I had the nurse moving tubes and wires and making way for me to lay down next to Ruby in her bed. I had been wanting to so badly, but thought it wasn't possible with everything going on. I was so excited to be able to snuggle up to my baby girl. I carefully climbed up into the bed on her right side. It felt like heaven to be so close to her when she needed me the most. I held her tiny swollen hand with one hand, and rubbed her warm soft tummy, and chubby legs with my other hand. Sometimes a girl just needs her mama, and sometimes a mama just needs her girl. It was a tender mercy. I am so thankful for those moments so close to my Ruby, because 12 hours later she would slip away.

Wrist Bands and Pictures

This is Mike. I have taken the responsibility to oversee the rubber wristbands and pictures of Ruby for my sister. A lot of people have asked so here is the information:

1. Rubber Wristbands: If you would like a Ruby Jane rubber wristband with her name on it you need to sign up to be an organ donor here. Once you are a registered donor in your state visit aniandmatttaylor.blogspot.com and click "yes" at the top right to indicate you are a donor. Once you have done that please email: rubyfoundation@gmail.com and indicate you have become a donor and indicate size (small or large) and color (gray or pink) and your mailing address. If you have requested one and it has not arrived please email us and let is know. Obviously a lot of emails from last week got lost in the shuffle with everything that occurred and probably will not get answered. The best way now is to email rubyfoundation@gmail.com and place an order.

2. Photo of Ruby: At the service we discussed Ruby's beautiful life and and her mission. We recognized that she changed us all and we want to remember that. We have printed copies of a beautiful Ruby picture that we have asked everyone at the service to take home and frame to serve as a reminder of all Ruby did and to remember her legacy. That is all we are asking to receive a picture. Ani has asked that we extend this to all, not just those present at the service. If you would like your own 4x6 Ruby picture simply email rubyfoundation@gmail.com and indicate you would like the picture and your shipping address. This will be sent at no charge to you.

Thank you so much and please help spread the word! Questions: rubyfoundation@gmail.com.

A lot of healing has taken place over the past few days. Yesterday was just what we needed. The amount of love and respect for our sweet daughter was so awe inspiring. Ruby loves being outside, and loves the sunshine on her face, so that is what we will be doing today. We are taking a "Ruby Day".

my arms are so empty. so, so empty. 7 months i held that baby in my arms, and now they are empty. it is such an awful feeling. no words can describe the pain my heart feels. a few days before her passing, i was trying to think of words to describe how my heart felt watching her suffer, and the only thing i could think of was my heart being dragged over hot coals. hot coals sound pretty good right about now. there is just no way to write out the anguish i feel. not only does my heart just ache and hurt beyond expression, but my whole body.
all day long i am in a constant battle with myself. one moment being overcome with grief and sorrow, and the next feeling complete comfort in the Plan of Salvation. i have to keep reminding myself of what i know to be true. it is what i cling to. oh, i am so thankful for eternal families.
the spirit was so close the day she passed on. i knew it was coming. i tried to convince myself otherwise, but it was whispered to me so clearly.
nothing really fell into place with her health. it was one road block after another. she was not meant to make it through her struggle. when the "what if's" and the "if only's" creep into my mind all day and night, i have to remember the prompting from the spirit. my father in heaven knew that i needed that. i fought so long and so hard for my baby, and i needed to hear that last day that He needed her Home with Him.
my arms will continue to long and ache for my daughter, but at least i know that she is in the loving arms of our Father in Heaven.

CORRECTION

We incorrectly listed the address of the chapel for tomorrow. Here is the correct one:

30522 Via Con Dios

Rancho Santa Margarita, CA 92688

how has Ruby changed your life?

This is Ani's sister, Danielle. Over the last few months, I have heard story after story of how little Ruby touched so many people's lives. I am working on putting a book together- where all of these precious memories can be in one place. If Ruby has helped you, is some way, will you please send your thoughts to me?

It can be anything big or small... I have heard stories of how people have started praying again, have gone back to church, have committed to a different lifestyle, have stopped doing dishes/folding laundry and snuggled their kids instead, have taken an extra minute at bedtime to read another story and give an extra kiss. For me, I made a promise to Ruby that I would be more patient and gentle with my children. Every day, I remember my promise to my niece and I am committed to not letting her down. If you can take a moment and send those thoughts to me, I know that Matt and Ani would love to read how their little baby has changed your life. Ruby was an example to us all and I know that she changed more lives in her 7 months, than I could ever hope to in my lifetime.

You can send me a message on facebook: Danielle Bewsey Edmonds
or email at: dne29@hotmail.com

There will also be a table set up at the service on Tuesday- where you can write your thoughts down.

our hearts are broken. yesterday morning when i woke up, it was so quiet. too quiet. all i could hear was the clock ticking. i am so thankful for my knowledge of eternal families, and that each second that goes by brings me closer to being with my sweet baby girl again.

Celebration of Baby Ruby

This is Mike. I can't express how much all the positive comments and thoughts have helped my dear sister. I have one more request for everyone: If you have been influenced in some way by baby Ruby come show your support as we celebrate her life this coming Tuesday. Let us make this standing room only and a show of overwhelming support for the Taylors. I can tell you that each person that shows up lifts the burden in some small way.

Service
The Church of Jesus Christ of Latter-Day Saints
30522 Via Con Dios
Rancho Santa Margarita, CA 92688
Tuesday, August 16th, 11:00am

Interment
El Toro Memorial Park
25751 Trabuco Road
Lake Forest, CA 92630
Tuesday, August 16th, following the service

Our sweet Ruby Jane went Home to be with her Father in Heaven last night. We both knew that her mission in this life was completed, and it was time for her to go Home.

we have another offer. it sounds like a child. they will need to be able to split it. ruby needs to stay stable. she has had some questionable stats today, so they are watching very closely. keep the faith. keep the prayers coming. this has got to be it!!!!

Living Donor

This is Mike. The response has been overwhelming from family and friends on the living donor front. We are truly grateful for this but need to make sure we are not working against ourselves. UCLA has one coordinator working on Ruby for living donors and our concern is that she is being inundated with calls and is having to work through all of the messages and losing time. My intent with this post is to clarify who would be eligible and therefore reduce the amount of calls that wouldn't be a match based on the criteria we know up front.

1. Small frame and body-There is no exact body or weight ratio they are looking for. All we can say is that our cousin we thought would be match was too big at 5'4" and 115 pounds. Fit and healthy donors are always preferable.

2. Cannot be breast-feeding

3. Must have healthy liver (no heavy drinking, smoking, drug use, disease)

4. Blood type must be A or O positive

5. Age-younger the better, must be 18 at least.

6. They would like to avoid young mothers, although this will not preclude you from donating

7. IMPORTANT-Please spend some time educating yourself on the surgery. This is not a simple surgery and comes with a fair amount of risk. 20% of the cases end in complication. You will spend 6 hours under for the operation, two days in the ICU, and another 7 days in the hospital (approximate times). Women will not be able to become pregnant for 12-24 months. Risk of death is negligible as that has occurred only once since 1985. Here is a link that explains some of the components. Please visit this page and explore the info available:

http://transplants.ucla.edu/body.cfm?id=66&oTopID=37

8. Lastly, for ethical reasons, the family cannot answer questions about the process or specifically if you would be a match. Please go through everything above, make the decision if you would like to proceed, and call the coordinator at UCLA at 310.794.3223. Her name is Karen. Most likely you will have to leave a message and await a call back. However, if you meet everything above and want to proceed it's worth noting on your message why you are a good match (i.e. small body and frame). Karen has been going through hundreds of calls that have come in trying to determine who could be a match. Keep in mind once a phone interview has been conducted and passed the living donor will have to come to UCLA and undergo many more tests such as MRI, CAT scan, physiological testing, etc.

Again, thank you so much for considering doing this.`` Hopefully the above provides some answers and allow more informed decisions to be made.

Ruby is somewhat stable right now. She is on a breathing tube, as well as constant dialysis. They are hoping the dialysis will remove all of the fluid build up and stabilize her enough that they would feel ready to take her to the OR if an offer was available.
She is at Status 1B right now. She had two calls yesterday. One was too big, and the other was positive for Heb B. We are hoping that tonight or tomorrow we get the perfect match for her. This girl needs it fast. My cousin was not a match.
It has been the longest, ugliest, most frightening 24 hours of my life thus far. There was about an hour where Ruby was literally fighting for her life, and we held her head and whispered into her ear the whole time. She is amazing. She is strong, and she is doing this. Pray that she can keep fighting this fight long enough to get a new liver into her.
Would you please also pray for us? We are struggling.

Update

This is Mike, Ani's brother, and she has asked me to update everyone as to what happened. Around 10:00pm Ruby coded and the rapid response team immediately began work on her. To summarize the very technical medical jargon that was explained to us she was in a "pre cardiac arrest" state where they were worried about her going into full cardiac arrest. Numerous doctors and nurses worked on her for over an hour to get her stable (about 15 people in the room all working very rapidly).

They were able to get her to a stable enough state to take her to the operating room and place a line for dialysis. The dialysis, as explained by my cousin/living donor option/amazing ER nurse, will do a ton to help her. The poor baby right now is completely swollen, sedated, and in need of the dialysis to help get her ready for the surgery.

In the midst of all this and Ruby crashing the doctors received a call from "up north" for a liver from a child, the best offer to date. The doctors are optimisitic due to the small size of the donor and will be flying there shortly. However, Ruby needs to be more stable before they operate. Right now, they would not perform the operation. She needs to be more stable.

Specificity brings about results. Our desire is to direct specific prayer towards Ruby stabilizing, first and foremost, and then that the donor liver will be a match.

Ani asked me to update: Ruby is being intubated this morning which places her in the highest possible category and the medical team feel like they have several viable options for donors. They are kindly asking that no more calls be made into the hospital for donors as it's bogging down the system (this is amazing!!!). Please spread the word. I will update again later. Matt and Ani are loving all of the support and prayers for Ruby.

Poor Ruby girl had a long hard night. She has not been very uncomfortable until just recently. She was up most of the night shrieking, and it just broke our hearts. It is infuriating to watch your child suffer, and not be able to offer any help. We tried everything. Finally, they order morphine and some oxygen for her, and she was finally able to rest around 3 or 4.
We are hoping to get news today if my cousin will be a match or not. Some people have been asking about the Living Related Donors. They will only consider family, or very, very close friends. They only work up one person at a time. So, right now, my cousin is being worked up, and if she is not a match, then they will move down the line to the next person they have waiting on the list. I am very thankful for all the people that are willing and ready to donate for Ruby. It is truly amazing how many people love this little girl!
We are hoping today is her lucky day. Our lucky day! August 9th has a good ring to it, right?!

My little fighter girl

Ruby is not doing very well. She is in the final stages of liver failure. Her clotting factors are very high, so she has been bleeding from her nose, and throwing up blood, and urinating blood as well. She is very sleepy, and uncomfortable. Her poor little belly is getting very large, and it is making it harder for her to breath. They are monitoring her very closely for any swelling or bleeding in her brain. They just gave her a very expensive medicine that should help with her bleeding, called Factor 7. It is $1700 for about 3mLs. Hopefully that will give her a little boost and it will help her bleeding slow down. It only is effective for 12 hours, so they will be needing to give that to her around the clock. Her mouth is so dry, and we are constantly swabbing out her mouth with a little sponge with water on it.

My sweet cousin flew in from out of state to be worked up as a donor. We are currently waiting for news if she is going to be a match. I hate the thought of anyone having to go through that. If she is a match, then they might do the surgery as early as tomorrow night. I just wish to badly that Matt or I would have been a match for our girl, and none else would have to make that sacrifice. I am just praying constantly that we get a call in the next day. Her score is currently a 41, on a scale that goes up to 40. So this little girl is definitely in need of this new liver fast. We are just waiting and waiting, and hoping. She can pull offers from all over the county now.

Her tiny body is working SO hard, and she is such a little fighter. She is getting so tired though. I can just see it in her eyes. Today we had some quiet moments alone together, and I rocked and sang to her, and I could just tell that she was tired of fighting so hard. I told her it would be ok, and that her new liver was coming very fast for her. I told her to keep fighting for a little bit longer, and everything will be ok. I am so proud of my strong daughter.

Even though she is tiny, I know she is mighty.

Happy Seven Months!

My Ruby Jane is 7 months today!
I feel like she has been mine forever. I thank my Heavenly Father for her every single day.


In celebration of her seven month of life, if you haven't already, will you consider registering to be an organ donor at Donate Life?
If we are willing to accept a lifesaving gift, shouldn't we be willing to offer it as well?
So many of these sweet children and babies are just waiting and waiting. Raising awareness about this important cause will save lives.
Over a thousand people read this blog everyday, so it shouldn't be hard to hit 200 donors today! Couldn't think of a more appropriate gift for Ruby's big day tomorrow.
I have a feeling that 7, is going to be her lucky number. I can feel it. It is going to be a good month for my babe.
Spread the word. Donate Life.

(Don't forget to take the poll on the right sidebar once you have signed up! Also, email me your address and we will send you a Ruby Jane wristband.)

My Kate Bug

We know that the storm is right around the corner.
We decided to take advantage of Ruby being on "hold", and take a night off, and enjoy some time with Kate.
My Dad had a sleep over with the Rubes, and Matt, Kate and I headed to a nearby hotel for some fun, real sleep, and a lot of snuggling. I sure miss my big girl. She is changing and growing up so fast, and I am trying to just grasp on to any moments with her that I can.
As much as I wish that her sweet and comfortable life was not turned upside down, I realized this week, that this is a learning experience for her as well. We have tried to keep her away when Ruby is doing really bad or hooked up to a lot of things, but really feel like it is ok for her see her sister in her "less than perfect" state. She is very mature about everything, and has really gotten comfortable hanging out at the hospital. She loves her baby sister, and get anxious to go back to her room when we are in the cafeteria.
I am missing my Kate tonight, and wishing I was jumping on a hotel bed with her again tonight.

Ruby is not doing very well. Her labs are all over the place. They are replacing as many things (blood, plasma, potassium, etc.) as they can in a day, and it is not making much of a difference. She feels terrible, and just wants to sleep all day.
Her doctor just came in and said she is open to accept livers again (did I mention she was on hold for a few days since she had a cough?) She said that she is very hard to manage right now, and we really just need for her to be transplanted soon.
Her blood pressure is low today, and her breathing is fast. If those do not improve at all today, then she is going to probably need to go back to the PICU for closer monitoring.
She is the sweetest little baby. I love her so much, and it is so hard to watch her suffer. I cannot even explain the feeling of the little moments of joy I feel when I get emails from people saying how Ruby has inspired them, helped them get through a hard day, or caused them to start praying again. She is such a special child, and she has already done so much good in her 6 (7 tomorrow!) months of life. She is my hero!

My achy breaky heart

My heart is aching.
Usually the aching comes, and I can eventually shake it by distracting myself with something like giving Ruby a bath, or cleaning up her bedding, or painting my nails. But this morning, it just hurts and isn't going away. When I got up this morning and walked over to Ruby I noticed a tiny little scratch by her eye. I got a wipe, and gently tried to get the blood off. But it wouldn't come off. I looked closer, and it seems like it might be like a broken capillary. The first words out of my mouth this morning were, "How much more will this baby need to go through?" It is odd that little things that push my emotions over the edge.
My heart just breaks looking at my poor girl. Her eyes are tired. Her little body is just tired of fighting and not working properly. It is time to get her fixed up. She still has not given up a smile, it has been 8 days now. I couldn't sleep again last night, so I looked at old pictures of Ruby smiling. I am glad I did, because I dreamed of her smiling so big and had that sparkle in her eye again. I am yearning for that day.
It is hard to be always longing for tomorrow. It is hard not being satisfied in today. I don't know how much longer I can watch my poor daughter suffer through this trial. I know it is in His hands, but I sure wish He would hurry up!
I thought writing through my aching heart would relieve it, but looks like I will need to try some chocolate or a good cry.
I'll try the chocolate first!

Perpective

The old me thought I was tired and stressed out. The old me was unsatisfied with my clothes, my weight, and my ugly carpet. The old me dreaded hearing the babies cry over the monitor, too early in the morning. The old me was bored watching cartoons, and folding laundry. The old me hated making breakfast, and pour endless sippy's full of milk every day. The old me dreaded running errands with two kids to get in and out of car seats and into shopping carts. The old me did not think it was a big deal to spend a Saturday at the beach, or paddle boating around the lake. The old me was tired and grump from walking up the hill to our house from the lake. The old couldn't wait until nap time, when I could have some time to myself. The old me hated doing dishes, and checking the mail. The old me rushed bedtime and skipped pages in bedtime stories. The old me sang lullaby's quickly, and was relucted to sing, "just one more."

What was the old me thinking?!
My heart is literally aching right now to have my old life back, but with my new perspective. What I would give to have my whole family home on a rainy Sunday morning, making breakfast, and delivering chocolate milk on a fancy platter to my little Kate. I want to forget about the dirty dishes, and get down on the floor with my girls and play, play, and play. I would be thankful for that cheap carpet, because it beats none at all. I dream of the day that I get to wake up in my bed, and hear BOTH girls waking me up early in the morning. I will make them whatever they want for breakfast, and turn the music up loud and dance while I make their pancakes (because I know that is what Kate will want.) I will get them dressed and spend time gently combing and doing their hair, and breathing them in. I won't rush them. What is the rush about anyway? I'll load them in their carseats, and give them kisses while I buckled them in. I'll be happy listening to Disney songs as we drive to Target, or McDonald's, or the park. I'll chase them, and tickle them, and push them on the swings. We will spend our evenings playing outside, and cooking dinner together in the kitchen. Bath time will be long and drawn out, just like it should be. Bedtime will have lots of cuddling, and a few bedtime stories read slowly while doing the appropriate voices for Papa Bear, Mama Bear, Baby Bear, and Goldilocks. Matt and I will fall into bed exhausted together, and thank Heavenly Father for this new perspective on life and what is truly important and ask that we might be able to always remember.

Drawing sent to us by a cute little girl! It is Kate and Ruby in their beds at home. I love this.

Not the one!

Can't wait to see her skin return back to normal color, and her eyes to be bright white and blue again!

Well, we finally fell asleep around 1:30 last night, and woke up at 2:00am to two doctors explaining that it was just not the right fit for Ruby. Oddly, I was totally ok with that news. I am SO scared for transplant. So scared. I can't believe I have to send my tiny girl off to this huge 6 hour surgery. It has been more than 3 months we had to wrap our heads around this, and we still haven't. How can we?
I know that the perfect match is out there. It is just going to be an trial and error until we find the right one. That, I am prepared for. It is never a sure thing until she is actually down in the OR. She has a little virus right now as well, so I feel more comfortable giving her a little extra time to get some more strength back. They are recalculating her score today, so she might be even higher up on the list. I know the transplant is right around the corner.

Us girls, this morning.

As scary as this all is, I am so excited for my girl to feel good again. She has not really bounced back from last week like we thought she would. She is on full monitors right now, and probably will be for awhile. Her breathing is a little bit labored, and fast. While her respirations are like they are, they are not following her to eat. She does not have very much energy, and has not smiled since last Monday. She has been throwing up. Her labs are all over the place. She is sleeping a lot as well. She is definitely getting worse. We knew this was going to happen, but it doesn't make it any easier to watch. I am just so thankful that there is light at the end of this tunnel. I am so thankful for good doctors, and technology. 25 years ago, she wouldn't have the chance that this transplant is giving her.
So, we just wait. We feel so thankful for all the prayers being offered up for Ruby and our family. We FEEL the strength and love and support. I can't even begin to express my gratitude. These prayers are literally getting us through this trial.
Thank you.

Ruby girl, trying to take her morning nap.